Hello, My 17 year old daugther Lily, had Jpouch surgery a few months ago after being in the hospital for 2 weeks with severe flare. Steroids and Remicade did not work. She had a scope a week ago and everything checked out to be healed up well and she will have take down surgery this Wednesday.
She has not had a great experience since the first surgery and I am hoping and praying things will start to look up after this next one. She has had trouble putting weight back on and has no appetite. Her output is liquidy about half of the time. She gets upset stomach after she eats which seems strange to me since the stomach wasn´t involved. Enzmyes seem to help. She is on imodium which doesn´t seem to help much. Metimucil helps but seems to come out right away. What concerns me most is the amount of discharge she has. Sometimes pink mucus, sometimes more ¨fleshy¨. The dr doesn´t seem too concerned but I´m worried it´s pouchitis or cuffitis. (My husband thinks I need to stay off the internet because I´m driving myself crazy!) The surgeon will be doing a scope to check for these things before surgery. She also has a strong urge to ¨go¨ which just started recently.
Any thoughts appreciated. Lily has been handling all of this much better than I have, she is really unbelievable and even has a sense of humor about it, even naming her stoma! I am strong in front of her (or at least try to be) but when I´m alone I am a wreck.
